June 11, 2015

So, our GI doctor has been out of town, which was part of the problem of treating his reflux in the hospital. Yesterday, his reflux was terrible, and he couldn't hold it down about an hour after his afternoon bolus. It was a little scary, with the poor kid retching and crying in pain. I can't deal with vomit, so he was trying to shoo me out of the bathroom. He was so bloated after, even though his stomach was pretty much empty.

I called the CF Clinic, and was very grateful to have someone answer the phone (do to some awesome people :-) and she was able to get a hold of the GI doctor quickly, and we made a few small changes to make it through the night. We went to clinic this morning. We didn't do another PFT since we had one just a few days ago in the hospital. He somehow managed to gain a pound and grew a bit.

We increased dosages of a few medications (bethanechol and zantac), added some new medications, some to help the stomach empty, some to help the stomach hold food better, and some to try to coat the irritation (Carafate). I learned today that when he has a lung flare up, it can also cause inflammation in other parts of his body, and can cause his GI system to work even slower than it normally does. So not fair for someone who needs to eat more when he's sick! The doctor mentioned a new type of Proton Pump Inhibitor that has helped a few other patients. It might be tricky to get it, but we're hoping.

We had a dressing change on his PICC line today. We plan to do one next Thursday, or possibly have it taken out! We might get an endoscopy done when the IV's are over to make sure there aren't any other issues causing his reflux and tummy troubles.